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Survey about achondroplasia
We have designed a questionnaire with the purpose to better know the population connected to achondroplasia.
The questionnaire is optional and anonymous. The data obtained will be used for statistical purposes and to better understand the natural history of achondroplasia. Please consider answering.
If you would like to take the survey later, you can click on the link at the top "Register at BA"
Inês Alves, Beyond Achondroplasia and ANDO Portugal founder, is representing the patients and contributing to the rare bone disease section of the 9th International Conference on Children's Bone Health as a member of a working group who organized this event by organizing a pre-meeting workshop on foramen magnum stenosis in children with achondroplasia.
 
The workshop is open to all who are actively managing groups of children with achondroplasia and involved in the decision-making surrounding foramen magnum stenosis and will include talks and discussions on several subjects, from screening to management of this complication, as well as pathopyhsiology and respiratory problems associated with foramen magnum stenosis.
 
It will take place on the 22nd of June, before the conference, and is registration is necessary for participation. Check the programme here and register here until the 3rd of May.
 

 

 

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